Living with a Heart Disease

Alright, I know you all have been waiting for this. I am going to tell you what it is like living with a heart disease. It WILL NOT be all in this post. There is a lot of stuff to tell you, so I will be doing a 2-3 blog post of what it is like living with one. This first post will be a about my past surgeries, future surgery/(surgeries), and the reasons why the thought(s) that goes through my head when I see my cardiologist when I go for an appointment.

Here we go, living with a heart disease can have its ups and downs. You go in and out of the hospital for the rest of your life just by having two open heart surgeries. Yes, I have had two open heart surgeries. My first one was when I was four days old and my second one was 4 years later when I was four years old. From my heart surgeries, I have only three heart valves while everyone, including you has four. Everyone needs four to function the older you get, but so far I don't need a fourth one...yet. They are waiting for the technology to catch up with my condition. My cardiologist said that he is going to do a Heart Cath Surgery by going up through my leg/thigh up to my heart to make my own heart valve out of own tissue. Right now, that heart cath is in testing and has been in testing for about 5-6 years now. He also said that a couple years ago that I needed it when I was in my early 20's, but as of my last appointment with him I don't need to have it until my 30's or 40's. Hearing that was a HUGE relief from me and my parents. 

Just the fact that knowing that I have to have another heart surgery is a scary feeling. Every time I go in to see my cardiologist, I feel like when he comes in from all of my usual testings he is going to say "Due to the testing results, it looks like you will need another heart surgery. So let me tell you what's going to happen with the surgery and I will have someone come in to schedule a time for the surgery. Don't worry Shayla, it is not a 'you need to have it done right now', but you do need to have it. Just to be on the safe side." Now I know that will not be word-for-word of what he will say, but that just runs through my mind every time he comes back from looking over my results. 

Now I did mention "my usual testings". My usual testings include two testings, the first one they do is  an Electrocardiogram (EKG or ECG) that checks for problems with the electrical activity of your heart. It translates the heart's electrical activity into line tracings on paper. The second test is an Echocardiogram (echo) which is a type of an ultrasound test that uses high-pitched sound waves that are sent through a device called a transducer. The device pick ups echoes of the sound waves as they bounce off the different parts of your heart. Those are my usual testings that I do every time I go in to see my cardiologist just so he can see where I am at with my heart. 

Side note: I thought I would share with you a picture of what I looked like after my first open heart surgery. 

Below is a photo taken by my father of me (the baby) and my mother right after my first open surgery in the NICU.